Thursday, March 31, 2011

I think he's decided to celebrate by being sick. He had four seizures today, so I'm not sure the fun outing I'd planned for tomorrow (he believes birthday parties should be relegated to the sixth circle of hell so we won't be having one of those) may not end up happening. If we need to stay home, open his presents and then spend the rest of the day watching his favorite musicals as a special birthday treat, then that's what we'll do.

Connor's big birthday present from us will be spread out over a number of weeks anyway. We figure that since his health has improved in a major way (other than today, of course) and his balance is so much better, it's time to start revisiting a favorite activity: horseback riding! So our present to him will be three months of once-a-week miniature horse riding sessions. Part of our outing tomorrow was supposed to be a visit to fit him with a new helmet for riding, since he's outgrown his old one.

Even if we postpone the riding for another day, though, I can't wait to see his face when we tell him he'll be riding again!

Wednesday, March 30, 2011

So I'm kind of divided into two parts right now. The logical, rational part of me has made a list of why I haven't yet received a phone call about Ellen, and why this may actually be a good thing. The list goes like this:

1) It's the liaison's first day back in the office. She's got a ton of catch-up work waiting for her and has to organize all of the new stuff she picked up on the kids before she makes her calls.
2) There are a whole bunch of other families-- all of whom want to hear about their kids just as much as we do-- who probably all called her the second the office opened and want to talk for an hour apiece with her to squeeze every little bitty detail they can about their kid from her brain. Her phone was probably ringing off the hook all day.
3) Last time we were the first family she called because she had bad news for us. So logically if we didn't get a phone call right off the bat it means that our news is good news.
4) She knows that we're understanding of her position and we're not going to freak out on her and file a whole bunch of complaints or something if she doesn't give us the news this second, so she'll call all the families who aren't quite so understanding and share stuff with them so they don't all explode or something.
5) It's not like the adoption agency is deliberately holding back information to torture me or something. They are extremely efficient, nice people who care deeply about these children and will let us know how the trip went as soon as they possibly can.

See? Logical. Rational. It makes perfect sense.

And then there's the other part of me. This part does not make lists. This is the part that is currently urging me to go grab a sleeping bag, set up camp outside the adoption agency's doorway, and refuse to leave until I have new pictures and video and have gotten every last little bit of information I possibly can.

Oh, and I should get it all right now, and all the other families can just wait. The fact that there are (hopefully) pictures and video and new information about Ellen a mere twenty minute drive away from me and I don't have access to them right this very second is just killing me. I had to force myself to leave the house so that I would not check my e-mail literally every three minutes (guess what I'm doing while I'm writing this?). I lunged for my cell phone every time it went off and was irrationally angry when the person on the other end of the line was not my adoption agency.

Oh, and also Connor had his first seizure in eight days. So between that and going absolutely insane over the whole adoption thing, you can guess how much I enjoyed the day.

I really didn't expect myself to have this much trouble waiting for my update on Ellen, and I'm wondering what the heck I'm going to look like when we're actually counting down to traveling. I'm imagining it's not going to be pretty. Luckily right now the logical part of me is winning out. Barely. I'd imagine that me chaining myself to the adoption agency's door and holding a vigal until I get pictures wouldn't really give them the impression that I'd be a particularly wonderful parent.

Tuesday, March 29, 2011

As a part of my Get Out Of The House So I Don't Go Crazy Waiting For Our Adoption Agency To Call campaign, I spent most of the day at the mall with Connor. I know the mall doesn't sound like a whole lot of fun for a kid, but trust me when I say that Connor enjoys the mall a whole lot more than he'd enjoy any of our usual haunts right now. The Children's Museum, Science Museum, zoo, etc are all great and wonderful, but not during Spring Break. During Spring Break they are all extremely crowded and make Connor super overstimulated. However, for some reason people don't think "Hey, it's Spring Break! Let's go to the mall!" so things aren't nearly as crowded there. This makes Connor pretty happy.

Also our mall has a carousel. This does not hurt.

So we spent the day out and about. We rode the carousel four or five times-- Connor really liked the zebra-- and wandered in and out of the stores while I imagined coming to the same place with my teenage daughter. I wondered which store would be her favorite and scouted out which stores I would absolutely not be buying her things in no matter what.

I was waiting for a phone call from the nurse line about Connor's MRI and hearing test tomorrow, but by the time we got home early this evening I still hadn't heard anything. So I called them up to see what was going on. After being shuffled around to various phone lines (including a fax machine at one point, which meant I had to start over) I finally managed to locate an appointment desk that could find Connor on their records. Apparently his MRI and ABR were moved to April 6th, and no one had gotten in touch with me about it. This explains why I didn't get a phone call from the nurse line today.

Good thing I called them; it would have been kind of awkward if I'd shown up there at seven in the morning tomorrow only to discover we didn't have an appointment. Also Connor would have been ticked about the whole not-eating-anything-for-twelve-hours thing-- especially if he had to do it again a week later.

Monday, March 28, 2011

Of course it would help if the weather would cooperate, because it looks absolutely nothing like Spring out there. Oh well. We spent the first day quietly inside, where he spent a whole lot of time looking kind of confused and asking repeatedly for Daddy. I guess he thought maybe it was still a weekend and was wondering what Jeremy had done with himself.

But no seizures today. Whoo hoo!

On Wednesday Connor should be having his MRI and his hearing test (both sedated) so I've started talking to him about that. He's got his Hospital Monkey-- a stuffed monkey that I modified to have all of Connor's surgical scars, hearing aids, a hospital bracelet, etc-- and I've been doing some role playing with him. He seems pretty nonchalant about the whole thing, but then it's not like hospitals are a new thing for him or anything.

Wednesday is also the day that our adoption liaison for Thailand is supposed to be back in the office, and as you might imagine I'm having just a wee bit of trouble waiting for her to call me to let me know how her visit with Ellen went. Even though I know that they have to put together all the pictures and video for these kids (and there are over sixty of them on the Waiting Child list, so it's not a small job) that doesn't stop me from wanting to have whatever information they've got like, yesterday. I'm doing my best to be patient; mostly by driving Jeremy insane with my incessant spouting of facts about Thailand, older child adoption and teenagers. Also I'm eating a whole lot of double chocolate cookies.

Sunday, March 27, 2011

I am kind of ridiculously tired at the moment, as I decided to do a two hour roller derby scrimmage and a two hour endurance practice back-to-back. This may not have been the smartest decision I've ever made in my entire life, but what the heck-- I love skating and I'm proud of myself for sticking it out through all four hours. We'll see whether or not I feel the same way tomorrow morning when I wake up and discover just how sore I've managed to make myself.

Oh well.

Can you believe we've gone six whole days without a single big seizure? The last time that happened without him taking daily Ativan was at the very beginning of February, believe it or not. He's had a truly rough time of it the past few months and it's so nice to see him really starting to recover. I can't tell you how much better I feel too. It's pretty rough on the whole family when he has a really bad spell, and the past three months have probably been the worst he's ever been except for those first five and a half weeks after he was born. I'm so glad that he's really getting a break, and I'm hopeful that the trend is going to continue and that this time we've really got it figured out. He's been on the Trileptal for over a year now, so coming down off of it might just be the one thing he really needed to get them under control. We'll just have to see what this year brings!

Now if I could get the kid to sleep at night I'd be really happy. I'm guessing that once he's down completely off the Trileptal his sleep patterns will settle down, but right now he's still wide awake and it's almost midnight. He also doesn't sleep whenever we change his routine in a major way, and it's Spring Break now so I'm thinking that I'm probably going to be seeing a whole lot of this sort of behavior this week. I'll just have to wait it out until Spring Break is over and then declare his school time my official nap time until I get caught up. Productive? Maybe not. But a girl needs her beauty sleep, right?

Saturday, March 26, 2011

So Friday was Connor's last day of school before Spring Break, and it was Pajama Day in honor of the occasion. I put the little guy's brace on early so that his morning hour in it would be up before school started (normally he takes it off half an hour into the school day) and he would be able to fit into his pajamas. His pajama bottom waistbands won't fit over the brace.

Anyway, I'd tried to explain to Connor about Pajama Day, but apparently he didn't get the concept because when I got out his pajamas he got really still for a minute or so. You could see the wheels turning in his head: I wear school clothes to school . . .
I wear pajamas to bed . . .
Mom is putting my pajamas on . . .
so I'm not going to school . . .
I must be going back to bed . . .
ZOMG SYSTEM ERROR FREAK OUT RIGHT NOW!!!!

He threw a fit. A screaming meemies, sobbing, knock-down, drag-out temper tantrum of a fit, and no amount of explaining on my part was going to convince him that I wasn't attempting to put him to bed at 8:00 in the morning.

So I put his regular clothes back on. He went to school blotchy-faced but happy as a clam.

Friday night, of course, was Tramp Camp for me. I feel the need to clarify that my roller derby team's name is the Trampires so none of you get the wrong idea. I'm not sure what the lady next to me in the grocery store thought I was doing when she heard me mention over the phone to a friend that I was "buying snacks for Tramp Camp," but judging from the horribly fascinated look she shot me and how she started discreetly edging away I suspect she thought I was attending some sort of organized retreat for excessively promiscuous women. I thought about throwing in something over the phone about how I was looking forward to my Basket Weaving And Man Stealing 101 class just to mess with her, but I managed to restrain myself.

At any rate, Tramp Camp was a whole lot of fun and I had a fantastic time! I skate with a bunch of really genuinely nice women, and it was pretty great to get away for a little while and spend some time getting to know my team and my coach better. Also despite having stayed up into the wee hours of the morning I think I actually got more sleep there than I've averaged at home in the past week. Connor's been having a little trouble with the insomnia lately.

Thursday, March 24, 2011

Connor had an EEG today and was a very good boy! He didn't pull any of his leads out or anything, he thought the strobe light was funny, and he got to watch some television so overall he had a pretty good time. Afterwards we stopped by the bookstore for his usual reward book, and then we headed home.

We got caught in traffic and it took us almost two hours to get home, so it was too late to head to roller derby practice by the time we made it back. Since we still had respite care though, Jer and I went out on a date! We stopped for some yummy food at one of our local Thai restaurants, and then hit the bookstore and the coffee shop. It was nice to get the chance to go out and spend a quiet evening with him; we've both been so busy that it's been a little while since we had a date!

So overall it was a pretty good day. Hopefully we'll get the results of Connor's EEG some time in the next week, and we'll see what's going on in that head of his!

Wednesday, March 23, 2011

Really, I could get used to this. Maybe the kid had such a rough run of things so I would appreciate it so much more when he actually had a good day. That's pretty much the strategy I used on my mother in regards to cleaning my room pretty much my entire childhood-- I figured if I kept it really messy all the time then her standards would be lower and she would be really excited the once a month or so that I actually cleaned it up. I don't think she was really thrilled with my theory.

Sorry, Mom.

Anyway, so once again he had no big seizures, and he had a great time at his physical and occupational therapies despite having gotten about four hours of sleep the night before. I think I should pretty much expect to be spending Tuesday nights up for the next month until we're completely worked down off the medication. Thankfully his insomnia only lasts one night and he's fast asleep right now.

We saw some pretty amazing stuff at his physical therapy session; we had Connor standing and he was not only allowing us to rest his hands on the table top, he was actually keeping them there and bearing some weight through them! That puts him one step closer to being able to stand on his own, and it was pretty exciting. I've noticed a definite improvement in his balance over the last week or so, and he's now jerking only once about every fifteen minutes instead of once a minute. The change is pretty incredible.

Even Mother Nature got in on the act today; the sun came up through the clouds and stayed out the entire day, and it the weather stayed warm enough that Connor didn't even need a coat on outside! Since we live in the Pacific Northwest, we all go a little stir crazy in the winter time and the return of the sun is a pretty important occasion. I threw open all of the blinds and while I did laundry and cleaned the house I wheeled Connor from one window to another. Every time we passed one his whole face lit up and he signed "Light! Light!" while he squealed in complete and utter joy. The cats were just as thrilled, and we had to dodge them on our circuit around the windows because they were both sprawled out on the floor underneath whichever window had the best light at that particular hour. And every time we stood in a patch of sun and I heard my son laugh I felt a little bit lighter myself, as if some great weight I'd been carrying on my shoulders was being lifted up and swept off with the retreating clouds.

I know that the weather up here is pretty fickle, and it's likely that tomorrow we'll be back to a whole lot of gloomy skies and rain.

Tuesday, March 22, 2011

Connor had another fantastic day today, which made me pretty happy! Not only did he have zero large seizures (and significantly fewer small ones) but we got to sign off on a doctor!

Yes, we can officially say "auf weidersehen" to the Endocrinology department, who gave Connor a clean bill of health and said we didn't have to come back! Can I just say that I absolutely love these types of appointments? I always want to do a little dance and high-five the doctor when they tell us we don't have to come back instead of giving us two or three more specialists we have to go see and writing us up a whole bunch of orders for various new things we need to do. I'm pretty sure the doctor wasn't ready for the awe-inspiring sight (read: terrible) that is my Happy Dance, though, so I managed to restrain myself. Barely. Considering this is only about the second time this has ever happened, I'm amazed that I was able to reign myself in.

Until I got home, anyway, where Connor thought the dancing was pretty great and the cats looked appropriately offended.

So it was a great day! Of course Connor is still awake, which I pretty much figured was going to happen since we went down on his Trileptal again today. He's in there happily singing away to himself. Luckily I anticipated and picked up a new book so that I won't be end up tearing up over sappy Thai life insurance commercials at two in the morning like I did the last time Connor had insomnia.

Monday, March 21, 2011

Connor hasn't had a single seizure today! I think he's completely over the 24 hour bug he had and has also acclimated to his medication change. Just in time, too-- we'll be switching it up again on him tomorrow when we drop down another 2ml on his daily dose. Oh well.

Today Connor was fitted for and received his new ankle-foot orthotics (AFOs) and back brace! We were only expecting to get the AFOs today, but we got a call from the orthotic center just after I picked the little guy up from school to let us know that the back brace had also come in and if we got to our appointment thirty minutes early we could walk out the door with both. So I popped Connor back in the car and we drove up for his fitting.

So here's one of his shiny new AFOs! Connor picked out the colors and whatnot himself. Well, actually Connor had zero interest in the colors and I might have helped just a little bit. The fact that red and black happen to be my roller derby team colors is completely coincidental, I assure you.

He did pick out the fire-themed straps, though.

Anyway, the AFOs are pretty much like his old ones except they are made of slightly sturdier stuff to offer more support and they come up a bit higher on his ankle. The back brace, however, is a new animal for us, so they showed me how to strap him in correctly and cinch the thing up.

He's supposed to wear it for an hour at a time two or three times a day and then work up from there. Connor doesn't seem to mind it too much, though he doesn't really want to sit up on his own with it on. He's used to being able to bend forward to keep his balance, and the brace doesn't allow him to do that. I swear he looks about three inches taller with it on!

So we walked out of there with his new AFOs, the back brace, five pairs of socks, a temporary "body tube sock" for him to wear under his brace until his undershirts get here, and the pièce de résistance: plaster molds of Connor's feet. I took a picture for you of them but then I had to hide them because of my cat's bizarre plaster fetish. Mmm, tasty.

Some parents collect their child's drawings or lovingly create scrapbooks of baby photos. Not me. I collect reproductions of my child's body parts. So far I have photos of his adrenal gland (they took some for a medical textbook while they were removing his kidney), fetal MRI photos in which he is basically a giant brain with eyeballs and looks like one of those aliens from Mars Attacks, x-rays of his spine, and photos from a barium swallow study in which you can view the outline of several of his internal organs.

Now I can add his feet to the mix. I figure that Connor will be able to trump pretty much any of his classmate's attempts at Show-And-Tell for his entire childhood. Who wants to see some kid's missing tooth or pet goldfish when you can bring photos of your own adrenal gland to school?

Sunday, March 20, 2011

Today I went to the local Thai temple for my first Thai language lesson!

Boy, have I got my work cut out for me.

Our teacher (who is amazing, by the way) is a firm believer in learning how to write the Thai language before learning how to speak it. This is because the Thai alphabet is entirely different from the English alphabet, so if you want to learn a word correctly you have to know the Thai spelling. She put me to work learning the first eleven consonants this week. There are forty-four in the Thai alphabet, and once I have those down it will be time to move on to the vowels.

I was super nervous going up to the temple because I knew absolutely no one, was coming unannounced, I'm Episcopalian (which is sort of a far-cry from Buddhism), I don't know any of the Thai cultural traditions and I was afraid I would screw something up in a big way and get kicked out. Luckily everyone was extremely nice and I didn't have any problem finding the classroom. It's only me and three other students-- only one of which is apparently a regular. This means we get a whole lot of individual attention, which is fantastic. The temple and the grounds themselves are gorgeous; it looks like somebody picked up a chunk of Thailand and transplanted it onto a small, out-of-the-way street in Washington state.

It's going to be a very slow process, but I think it will ultimately be a valuable one because it will give me a strong connection to Ellen. I could start off learning a bunch of phrases (and I'm sure I probably will memorize some before I go over, as phrases like "Where's the bathroom?" will probably be pretty important) but I'd really like to learn the language well, and that means not skipping the basics. I hope that in the future once Ellen's adoption is finalized we'll take some family trips to Thailand, and we shouldn't have to rely on her to translate for us. Jeremy will be coming to lessons too when Connor isn't sick, so we'll be able to study together.

I'm also excited because with the exception of the Thai language class (everyone there was either half-Thai, married to a Thai person, or wanted to be married to a Thai person-- which is a whole other story I'm not going to go into here) almost everyone at the temple was Thai. The services were in Thai (though I didn't see those as the language lessons go on during the services), the building and grounds are maintained in the Thai fashion, and this will be a perfect place for us to learn Thai customs and etiquette so we don't make any huge mistakes when we go over. It should also be a great place for me to adjust my palate to Thai food; everyone brings a large amount of food to the temple and after the monks eat they have sort of a potluck. Everyone who attends the services brings blankets and sits on the floor of the temple with their families, and the language class sits together downstairs at a large table. I'm not sure what everything was that I tried, but it was all very, very good and very, very spicy.

They also have Thai dancing classes that go on in the room next door to the classes. It was really cute to watch the kids hopping around, and we know that Ellen enjoys Thai dancing so that may be something she wants to pursue. Apparently they perform at many of the festivals during the year. There were even several children around her age who had been adopted! I think it will be a great resource for us in the future. They invited me to bring the whole family to the Songkran celebration (the traditional Thai new year) next month, and I'm pretty sure we're going to go!

Connor had a much better day today; he only had one seizure and his temperature was normal. I think he's close to over this bug, which is a very good thing! He spent most of the day hanging out with his daddy while I made oxtail soup. Making oxtail soup is sort of an all-day process.

I first encountered oxtail soup as a teenager on a trip to Italy, and every once in a while I try and reproduce it. I haven't ever been quite able to capture the proper flavor, but that doesn't keep me from trying! It's not all that difficult to make, but it takes about six hours from start to finish so it's something for a day where there's not a whole lot else going on. The kind I make usually ends up being a really rich, thick meaty sort of stew, and if it doesn't taste quite like the type I remember from Italy that doesn't mean it isn't still pretty good!

So overall it was a pretty great day! I learned how to actually pronounce my daughter's name and where she's staying, I learned eleven letters of the alphabet, how to say "hello" and "thank you," and the word for "spicy." While I don't think I'll be reading War and Peace in Thai any time soon, it's a start!

Saturday, March 19, 2011

Connor started off the morning without a fever and then slowly developed one during the day. Other than the seizures we've seen no other indication that he's sick, making me wonder if he's picked up a UTI or some other bug that wouldn't involve congestion. He had seven or eight seizures today-- Jer and I lost count between us-- that lasted between ten to twenty seconds each. It's difficult to know whether or not he's having the seizures because of his fever or because he's having a reaction to weaning down off the Trileptal, but we'll let the neurologist's office know and they can take it from there.

It was a beautiful sunny day outside, and I spent part of it out in the yard weeding the front garden, which has been sadly neglected because of Connor's shenanigans. I had to take a break and go clean out my hummingbird feeder (which has also been sadly neglected over the winter) because one persistent little hummingbird sat in our flowering cheery tree and scolded me for an hour or so until I gave in and got her some food. Evidently she thought I was out there to cater to her. My guess is that she had hungry chicks to feed; the breeding season for the hummingbirds around here runs from December through May so she probably had some demanding, hungry mouths waiting back in her nest.

Hummingbirds will be one of many new experiences Ellen will have when she joins our family; they don't live in Thailand. I have a group of five or six regulars who are downright cheeky; they often congregate around the feeder in the spring and fall months and drink out of the thing as I'm refilling it. Connor loves to watch them, and I'm looking forward to seeing our daughter discover them for the first time! I'm also hoping she'll want to help me out in the garden. I really enjoy gardening (though you wouldn't think it if you took a look at my yard the way it is now) and it would be a fun mother-daughter activity to share.

Our agency took off for Thailand today, and so the countdown for new pictures and information begins! I've had a lot of questions asked about our adoption process recently, so I made a quick list of the ones we get most often and I thought I'd address them here. Some of these questions will probably seem redundant to you regular blog followers, but I'll go ahead and put them down anyway since I get asked them so often. Eventually I'll get around to updating the blog since it's not really just about Connor anymore, but I'm sort of lazy and I don't know when that's actually going to happen. So here's what you get in the meantime.

So who the heck is Ellen anyway?
"Ellen" is the thirteen year old girl we are adopting. She currently lives in an orphanage near the city of Bangkok in Thailand. She has cerebral palsy that affects her lower legs-- particularly the left leg-- and has spent almost all of her life in an orphanage.

Ellen isn't a Thai name! Are you changing her name?
Ellen is the alias we're using for our daughter to protect her privacy and to make sure we respect Thailand's wishes in regards to publicly sharing information about a child in the adoption process. That's also why you won't see any pictures of her here for the time being. It is not her real name, which we will be keeping. We'll also probably give her a chance to choose an American name, and she can choose which one she wants to use. That probably won't be Ellen either, as the name is kind of hard for Thai speaking people to say.

What's her birth story? Why is she in an orphanage?
That's her own story to tell, not mine. Sorry. You won't see it end up here unless she chooses to share it.

How much does it cost to adopt a child like Ellen?
Less than you'd think. Basically it ends up being a bunch of money up front, but in our case most of it should be refunded through grants and the tax credit that the US currently offers for adoption. Also Ellen's adoption fees are substantially lower because she is an older waiting child and harder to place. Also I would like to point out that no, we are not buying Ellen, thank you very much. We are paying for the background check, paperwork processing, travel, visa application, etc.-- not for our child.

When will she come home?
Not for a long while yet. While we're hopeful that the process may be speeded up a bit because of Ellen's age and her special need, we could be easily looking at between a year to two and half years before we bring her home. We'll keep you posted!

If I answer any more questions right now than this blog post is going to be ridiculously long, so I'll save the rest for another day. It's a start, anyway. If you've got a question you want answered, let me know and I'll see what I can do!

Friday, March 18, 2011

I swear I should know better than to write overly optimistic, upbeat blog posts. I am really great at jinxing myself.

So we're pretty sure Connor's getting sick. Before I put him on the Tylenol he was running a fever of about 101.4, which is enough to suggest that he's actually getting sick and it's not just me being paranoid. That and the fact that he had nine larger seizures today.

Yes. Nine.

None of them were more than about twenty seconds long, thankfully, and they were all the still-breathing kind, but nine seizures in one day is probably a new record for him and is way, way more seizures than I am comfortable with. We gave him a dose of Ativan after seizure number five. That was also the seizure where I thought to take his temperature and discovered he was running a fever. I'm not really sure if giving him Tylenol helps stave off the seizures or not since he had four more after that, but if it does do anything I'd hate to think how many seizures he might have had without it. I don't know why I didn't think to check his temperature until after he'd already had five. Possibly I wasn't thinking clearly; I was flustered because of the earlier events of the day, which pretty much assured that I won't be winning any Mother Of The Year awards any time soon.

So about that-- after I dropped Connor off at school (he had a very short seizure right before school, which I probably should have taken as a warning) I headed home, picked up the books I needed to drop by the library, hit the bathroom really quickly and was off to my local coffee shop. Then I swung by a little antique store and spent a leisurely time picking out a necklace and bracelet for Ellen to put away with her things for when she comes home. After that I walked to the library, where I browsed for books for twenty minutes or so. I thought I'd go back to the house and get the kitchen cleaned up before it was time to pick the little guy up from school. When I got back I was surprised to see Jer pulled up in the driveway; he's normally at work that time of day. He was throwing the car seat in the back of the car.

"Have you got Connor?" he asked me.
"No," I said, baffled.
"He's had a whole bunch of seizures at school and they've been trying to reach you for an hour."

I threw myself back into the van and drove down to the school, cursing myself the whole way. I'd left my cell phone sitting on the bathroom counter, where it had been ringing away more and more insistently the entire time I'd enjoyed my quiet morning.

I ended up talking with the nurse and teachers and we decided that since he'd had a quick recovery from his (three!) seizures at school that he could stay until the end of the day, and there was no harm done. But I'm now considering having my phone surgically implanted into my body so that I can never leave it at home again. Somehow I've managed to have it with me the other eight months or so he's been in school and I almost never get a phone call. The one day I accidentally leave it at home is of course the day the kid's brain implodes.

Yeah. Mother Of The Year, right here. I'll start working on my acceptance speech, because I've totally got that one in the bag.

Thursday, March 17, 2011

It's only been three and a half days since we began dropping Connor's medication and we already think we're noticing a difference.

He doesn't seem as, um, twitchy, for one thing. I'd say we're seeing him twitch about once every five minutes as opposed to once every three minutes. Also his attention span seems to be quite a bit longer. He was able to focus on one activity in occupational therapy today for dang near twenty minutes, which is pretty impressive for him. They really noticed a difference in him at school today too-- apparently he had a fantastic day! His teacher shot some hilarious video of him hamming it up in the classroom that was pretty adorable.

Not that I have a biased opinion or anything, but you know. Whatever. He's pretty darn cute.

He did end up having three larger seizures today in the late afternoon and early evening-- thankfully the still breathing kind. However his recovery from those seemed to be much faster than what we normally see; he didn't have to take a nap or anything afterwards and usually that kind of seizure activity would wipe him out completely. So while I'm not happy that he's still having lots of big seizures, I'm encouraged that they might not have as large an effect on him as they do when he's already seizing all the time.

While it's possible that we could be indulging in some wishful thinking, Connor really did have a fantastic day despite the big seizures. I'm hopeful that as we continue to move down on his Trileptal (we'll drop down the dosage again next Tuesday) the little seizures will taper off and then we'll get the chance to see what he can really do!

Wednesday, March 16, 2011

I figure that maybe he feels something is "off" in his world when we mess with his medication levels, and in protest he decides to stay awake forever or until we give in and put everything back the way he's used to it-- whichever comes first. We're coming down slowly off the Trileptal that was, um, essentially poisoning him, and as a result he stayed up until four-thirty in the morning yesterday. No amount of diaper changing, repositioning, lullaby singing, or (after about two am) begging and pleading could move him. Finally he gave up just as the sun was coming up and fell asleep. Then he proceeded to sleep in until two in the afternoon, canceling my plans for the rest of the day.

Sigh. At least I got to sleep in too.

Thankfully he fell asleep easily tonight-- I was sort of expecting him to be nocturnal again. He didn't have any big seizures today, either. I'm hoping that as we continue to taper off the Trileptal we'll see fewer of those as well as a reduction in the little seizures. We're still processing the new information about Connor's seizures and getting used to the idea that he's probably been having hundreds more than we thought. It'll take us a little while to readjust, so bear with me. I'm still kind of hoping that his EEG will show these aren't seizures, but are just part of his cerebral palsy or something-- as unlikely as that is.

The good news is that if he's been functioning this well while having hundreds of seizures a day, he'll probably make some big strides once he's not having all of these issues. I can't wait to see what new incredible things he'll be doing once he's not dealing with all of those little "pauses" in what's going on around him!

Tuesday, March 15, 2011

We're home, with a whole lot of new information and a tentative game plan!

So first of all, we're pretty sure Connor isn't having one, or five, or even seven seizures a day like we thought. Actually he's having hundreds.

Glorious.

While we haven't had an EEG yet to confirm, the doctor is pretty sure based on his observation of Connor and the symptoms I described to him that Connor is having myoclonic seizures about once every minute or two. You can read more about myoclonic seizures over here if you'd like, but basically they're a really quick, short seizure that causes muscle contractions. They're probably the source of the twitching and "startling" we've seen Connor doing over the last few months. While these seizures aren't nearly as dramatic as his larger seizures, they still aren't so hot for his development. Trying to interact with people for Connor right now would be kind of like you watching a movie and having someone randomly hit the mute button and cover your eyes briefly about once every minute. He's probably missing out on a lot of information, and it's probably pretty hard on his body, too. We're seeing abnormal reflexes on his left side all the time right now instead of just after a seizure. Needless to say I am not particularly thrilled about this development.

The good news is that the doctor thinks he might know why we're seeing them now, along with an upswing in the seizures. Connor's Trileptal levels are well above the upper threshold of appropriate dosage. When Trileptal levels are too high the medication can trigger myoclonic seizures as well as cause his other seizures to be worse. It can also cause muscle weakness, fatigue and heightened reflexes-- all of which are pretty evident in the little guy right now. Even if the Trileptal is not causing the myoclonic seizures (and I'm hoping it is) then it's really not an appropriate drug for a kid with them to be taking since it can make them much worse.

So we'll be coming down off the Trileptal over a six week period, starting tonight. We'll ease down by reducing his dose 1ml per week and see what that does to his seizures. Then we can start talking about other drugs if necessary.

And we'd be trying other drugs instead of the ketogenic diet or the vagal nerve stimulator because the epileptologist doesn't believe Connor would be a good candidate for either. The ketogenic diet has a tendency to cause kidney stones, which is the last thing a kid with one kidney needs. The VNS apparently doesn't work well at all for children with white matter migratory issues like Connor's, and there's no point in doing the surgery for him except as a very last resort since it has a much-reduced chance of improving anything.

So we're going to see what happens when we start taking him off the Trileptal over the next few weeks. Hopefully this will improve matters greatly. If it doesn't, I believe the next step will probably be to increase the Lamictal again. If that doesn't work we'll be looking at a drug called Depakote as the next possible medication he'll take.

We're going to try to stay at home while we go down on the Trileptal instead of spending a bunch of time in the hospital. We're hoping the seizures will respond quickly to the medication change, and we have instructions to call up there if they don't start decreasing or they become worse.

So we've got some idea of where we're going now, which I'm thankful for. We'll just have to see what the next few weeks bring.

Monday, March 14, 2011

The neurology triage nurse called me bright and early this morning to get an update on Connor and let me know how things were looking on his end. They weren't able to get us a cancellation appointment for today, but they did find an appointment with the epileptologist for us tomorrow morning, which is still pretty darn amazing. Next-day appointments at top-of-the-line, super-specialized clinics like this one just don't happen. It's the medical world equivalent of dividing by zero. So apparently we win the "Congratulations, Your Child Is So Sick That Even The Super Special-Type Specialists Are Freaking Out About It" award.

This is not really an award I ever wanted to win.

At any rate, Connor spent most of today still pretty sedated from the Diastat. He had these completely limp-noodle legs going on, so every time I carried him around it felt sort of like I was holding a ventriloquist doll. He alternated between sleeping, snuggling, and telling me he didn't feel good and was tired and sad. It was pretty heartbreaking, but at least he didn't have any seizures.

He started perking up a little in the late afternoon, and by the time Jer got home he was sitting up pretty well by himself again and had started to take more of an interest in what was going on around him. While it was nice to see him feeling a bit better, it also was an indicator that the Diastat was starting to wear off. This means that I'll probably need to watch him pretty carefully on the drive up to the hospital, as I'm not sure how much of it will still be in his system and I don't really want him to start having seizures again on the highway.

I really have no idea how this appointment is going to go-- I had no idea epileptologists even existed before a couple of weeks ago, so I don't really know what to expect. I'm just hopeful that we'll walk out of there with a concise game plan about what to do.

I really wish I had a magic wand sometimes, and I could just wave it and fix this.

Sunday, March 13, 2011

Connor had five seizures today: including one a couple of hours after he'd been given Ativan. We ended up using the Diastat during the last one, which was a scary five minutes long. At least only one of those five seizures was apneic today-- yesterday it was three out of the four.

Since it was obvious by now that Connor's seizures were completely out of control and on weekends the nurse triage line is shut down and I wouldn't be able to expect an answer until Monday, I called the Children's hospital and had them page the neurologist on-call directly. I only use this as a very last we're-out-of-options resort because technically you're really not supposed to do it unless you're medical personnel calling from another hospital to discuss a patient's care. But I'd had a couple of the neurologists give me their blessing in the past on this sort of thing, and I figured I'd try my luck and see if one that already knows Connor was on staff tonight. By now the list of neurologists up there he hasn't had at least some contact with during a hospital stay is getting to be really, really short.

Yes, I have figured out how to convince the operator to actually bend the rules and page the neurologist for me. I have my ways. Let's just say that I am normally an extremely nice person (and I start out my conversations with the operator in Nice Mom mode) but I can be completely, totally ruthless when it comes to getting what my son needs if that doesn't work out.

Thankfully I didn't have to go past the initial friendly request this time-- the operator was really nice and connected me without a fuss. I've found that it really depends on which operator you get as far as how much pushing you end up having to do. Some are more sticklers for the rules than others.

Anyway, so I got a call back about ten minutes later, and I was in luck. Turns out the fantastic neurologist who initially managed Connor's care the last time he was up there was the person on call, and she knew immediately who the little guy was and why I was probably calling. She's now attempting to get an appointment with the epileptologist tomorrow rather than in mid-April, which is when it is currently scheduled. She'll speak with the epileptologist personally and make sure they have Connor's background information and history.

We're hoping that the little guy-- who is now sedated to the gills on Diastat-- will remain seizure free until then. Diastat usually stays in the body for about two days, so with any luck that will give us a window of time to work with and hash out a game plan. If we do get in I'm not sure yet whether or not he'll be admitted once he gets there-- they may want to see what a typical seizure for him looks like so they can treat him more effectively-- but I'll let you know whether or not we end up downtown for an extended period of time again. Please keep us in your thoughts and prayers over the next few days-- we sure could use them.

Friday, March 11, 2011

Connor had another small apneic seizure today. So much for the "one-a-week" thing. I really wish he'd cut it out.

We dropped off our donations for Ellen's orphanage today at the adoption agency along with her care package. Most of the things we picked out are for older children, since the babies tend to get a whole lot of donations and few people focus on the older kids.

While I was there I had a nice chat with our adoption liaison about the upcoming trip, and Connor joined in by naming everyone in the family for her-- including the cats. I was really excited to see him participating, because he doesn't often chime in to talk with people he doesn't know well.

We're still coming up with a sign for Ellen, but we've gently begun preparing the little guy again for the idea that he'll have a big sister. He honestly seems thrilled with the prospect-- his face lights up whenever we start talking about her. It's really sweet.

Thursday, March 10, 2011

Last night Connor decided that one in the morning was the perfect time to get up. Since I'd gone to bed about midnight after a late roller derby event, I was not particularly appreciative of this. Despite my best efforts to get him back to sleep, he proceeded to happily yell and sing to himself for the next six hours until it was actually time to get up. As a result this blog may be a little delirious sounding, because I'm not running on all cylinders.

This has been evident for a good portion of today in which I bungled around doing errands and chores in what I thought was a competent manner, but was in fact completely insane. Things like how I made myself some tea but accidentally left out the teabag and it wasn't until it was mostly gone that I realized I was drinking hot water with honey in it. Also how I got all the way to derby practice tonight and was going up the steps when I realized that I'd left my skates in the entryway of my house. Thank goodness I didn't try working with power tools or with anything involving fire today. I probably would have killed myself.

Connor also unfortunately had his first seizure in several days-- a two minute long apneic seizure. I was hoping he'd get a slightly longer break from the seizures, but I'll keep my fingers crossed that we're back to a "one-a-week" pattern and this was his one for the week.

On a slightly more cheery front, I found out from our adoption agency that our dossier is back from Washington DC, where it had to go to get its final certification (this was after it had already been notarized by a local person and then certified by our state). This means that they'll be hand carrying our dossier to Thailand when they go next week and placing it directly in the hands of the adoption authority there! This is really exciting news because it means that the next step of the process to bring our daughter home will be starting. All we have left to do is wait, and wait, and wait. Really. We're going to wait a long time.

But at least we'll have new pictures and video soon! I sent off our ridiculously long list of questions for the orphanage to our adoption agency today, and they'll be taking it with them and asking as many as they can when they see Ellen. We don't expect to get all of them answered by any stretch of the imagination-- there are thirty-two on there-- but we'll take whatever we can get!

I added a few sparkly pencils, a couple of really cute animal-shaped erasers and a pencil sharpener shaped like a dog (you turn his tail to sharpen the pencil) to Ellen's care package, which I'll be dropping off to the agency tomorrow since I didn't have the chance to do it today. The agency leaves next Saturday! They'll be gone for about a week visiting orphanages around Thailand, including our daughter's current institution.

The program director has told us she'll try to get video and pictures of our daughter receiving our package and opening it up, which is pretty exciting. This may very well be the first personal gift Ellen has ever received.

I'll admit that I'm still feeling a little bit anxious about this trip. Honestly I'm sort of terrified that they'll get over there and discover that Ellen has mysteriously disappeared, or moved to another orphanage, or someone adopted her, or a member of her biological family popped up out of nowhere, or that something bad has happened to her, or-- well, you get the idea. Jer and I really, really want this adoption to work out, but it's hard not to think about what happened with Sylvie and not feel a little gun-shy. While I'm not going to pester our liaison with phone calls because I know she won't keep us waiting for news any longer than she absolutely has to, goodness knows I'm going to be pouncing on the phone every time it rings once I know she's back. So try not to take it personally if you call me during that time period and I sound a little disappointed when I pick up and discover it's not her, okay? I might be a little nuts by that point.

Wednesday, March 9, 2011

Connor doesn't have school on Wednesdays, so he slept in a little bit and then we went to occupational therapy where he amused himself by refusing to touch a wide variety of toys. Then we tried out the swing and he only wanted it to go side-to-side, not front-to-back. He let us know this by showing us his super mad face whenever it went in the wrong direction.

Someone isn't spoiled or anything.

In all reality it might have been only a mildly annoyed face, but with Connor it's impossible to tell. Because his facial nerves have a variety of issues (this is what causes his Duane Syndrome and also his inability to chew) he's unable to move the muscles of his face in subtle ways. As a result all of the expressions he makes are greatly exaggerated because that's the only way he has to get his point across. It's generally all or nothing with this kid.

Tuesday, March 8, 2011

I went out and bought donations for the children at Ellen's orphanage today. They're in need of things like clothing, vitamins, bandages, sanitary napkins, diapers, developmental toys and many other items. Our agency will carry the donations over when they travel to Thailand next week. When we go over to meet our daughter for the first time, we'll probably carry an extra suitcase full of donations like these to save on shipping costs.

In addition to the donations and Ellen's little package, the agency will also be carrying over a list of questions to ask the nannies (and also Ellen directly, as she's old enough to give her own answers). It's hard to know exactly what to ask because there are so many things we want to know about her and they have a limited time with each child. If we're lucky they'll go back to her orphanage in the fall and we'll get to ask some more questions, but this may potentially be the only time this year we get an update on her depending on the economy and the political situation in Thailand. We've got a really long list, so we don't expect all of them to be answered. It would be really exciting to have even a few answers though, because it will give us a better picture of the young lady we're hoping to make part of our family! We can't wait to see how much she's grown and find out more about her.

I am very happy to tell you that Connor had a fantastic day today. He slept easily and well last night, didn't have a single seizure, participated well in school and in general just seemed like his usual happy-go-lucky, laid-back self again. I'm so relieved that he's getting a break from the exhausting cycle of seizures he's had over the past few weeks! He's out and sleeping like a champ right now, which I am extremely thankful for. I'm getting the chance to catch up on sleep too!

Monday, March 7, 2011

Connor's appointment with the orthopedic surgeon was this afternoon, and when the doctor walked in we simultaneously recognized each other but had no idea why. After a couple of minutes of playing the "where do I know you from" game we realized that she'd done Jer's skin graft! That was why she looked so familiar. Turns out she was filling in the pediatric ortho's slot for a few months because the old one had just retired and the new one was still on the way. She was excited to hear about how well Jer is doing and happy to meet the little guy.

Connor, I'm sad to say, was not exactly at his best. The recent nights of little-to-no sleep seemed to all catch up to him at once today, and I had to wake him up at noon to go into the doctor's office. He fell asleep in the car on the way there, which is pretty much unheard of for him. Then he fell asleep in my arms after the resident's examination and slept right through two thirds of the appointment with the orthopedic doc-- even when I carried him into the next room to look at his x-rays. After we got home I put him down and he slept for another three hours, and when Jeremy put him to bed at seven in the evening he went down immediately. That was one tired kid. Hopefully this will mean the return to a normal sleep cycle-- something that I would be extremely happy about.

But on to the news. The doctor said that she doesn't think Connor's scoliosis will require surgery yet, and if we can keep it from getting worse with braces and positional seating it may not ever require surgery. So that was very good news. Unfortunately Connor's leg was another story.

So remember when the developmental doc called us and told us that Connor's right femur was "uncapping" and I had absolutely no idea what that meant? Here's how the orthopedist explained it to me.

First of all it's not his right femur, it's his left. And what's happening is that Connor's muscle tone is pretty weak and because of the scoliosis, there's uneven pressure on his hips all the time. As a result, Connor's leg isn't lining up perfectly with his hip anymore. The angle of the joint is wrong, so the "head" of the femur-- the ball part of the ball and socket joint-- is out of alignment and is starting to poke out of the hip joint. You can see a significant difference in the amount of the femur that's outside the socket joint in the x-rays taken last month and the x-rays taken two years ago. There's not anything we can do to prevent this, and while it doesn't bother him now eventually Connor's leg bone will start to pop entirely out of his hip, which can be extremely painful and will limit how much he can use the leg. So while there's nothing that needs to be done immediately, eventually they will probably have to do surgery to fix the problem.

The surgery they will need to do is called a Femoral Derotational Osteotomy. Basically they'll saw off the top of Connor's leg, realign it so it fits back in the hip joint correctly, and then put in a plate and bolt everything back together. It doesn't exactly sound like a whole lot of fun to me. You can read a more detailed explanation of the surgery here.

It won't be for a while yet because Connor's condition isn't to the point that he needs surgery right now, but basically it's just a matter of time. We'll be going back every few months to get more x-rays done and to see how quickly Connor's issue is progressing, and then we'll go from there. Needless to say I'm not particularly thrilled about this development, but there's absolutely nothing I can do about it short of magically changing Connor's low muscle tone that's going to correct the issue without surgical intervention.

Sunday, March 6, 2011

Connor stayed up until 4:30 in the morning last night. It's official: my child is now nocturnal.

He had a seizure around 3:00am, thereby cementing further into place my complete inability to sleep when he's awake. Since the little guy only has seizures when he's awake there's simply no way I can fall asleep while he's up. I ended up taking the monitor out into the living room around midnight and watching English dubbed Lakorns until the kid finally decided to get some shuteye.

Lakorns are Thai soap operas, and you can find an astonishing number of them in their entirety on the Internet. Our daughter-- like a whole lot of teenagers her age in Thailand-- loves the things. She apparently has a particular fondness for the historical series, known as Lakorn Borans. They're extremely tame by our standards; Thai television is much more heavily censored than American TV. Nudity, sexual scenes and drug use aren't allowed to be shown on any of their channels, graphic violence is rarely seen, and if the characters are playing cards a message scrolling across the screen reminds people that gambling for money in Thailand is illegal.

Saturday, March 5, 2011

Connor only had two seizures today, which was a big improvement. He also got a few more hours of sleep, which Jer and I both appreciated as well. Of course now he's making up for it by not sleeping again-- it's nearly midnight and he's still wide awake-- but I'll take every other day if I can't get anything else. I have no idea why he had such a bad day yesterday, though Jer and I speculated it might have been because we stepped down on the Ativan again. If that was in fact the cause of yesterday's horrific number of seizures, we can expect to have another extremely fun day on Monday, which is when we step down off of the drug entirely. That's also the day Connor has his appointment with the orthopedic surgeon.

Fun times.

I started on the little purse for Ellen's care package today. The little elephant I drew is a pretty simple design, so it only took me an hour or so to trace the pattern pieces, cut them out and put it all together. Tomorrow I'll go down to the fabric store and pick out a lining material, and I should have the whole thing done by the end of the day without any trouble.

I hope she likes it.

Because of issues with luggage space we're limited to sending what will fit in a quart sized bag. The travel chess set we bought for her is too big, so it'll have to wait for another day. So far for this care package-- in addition to the little purse I'm sewing on-- we've got a very simple little silver elephant charm necklace, some scented colored pencils (who knew such a thing existed?), a nice pen and a small cloth bound sketch pad. We're still thinking about other things to put in it; our agency's trip was moved to March 17th so we have until the 14th to continue shopping for her.

We're also working on our list of questions to send over. Some of the questions will probably be for the orphanage workers, but we'll also probably be getting some answers directly from her, so we want to choose our questions carefully. This could potentially be the only new information we get about her for a year.

Ellen won't be told about us for quite some time yet, but she's a smart kid and she's probably seen a whole lot of children come and go. I have to think she'll realize there's a possible family in the works when the agency begins asking her specific questions and giving her special gifts, even if she doesn't know any of the details yet. A few years ago she was "open to the idea of adoption" according to her caregivers, but we don't know if that's changed or not.

I'm sure she'll probably have mixed feelings about the idea; after all she's spent practically her entire life in the orphanage complex and no doubt considers it to be home. She'll be required to adjust to some very big, very scary changes in her life and no one is giving her a choice about it. I hope that she'll be able to receive information about us well before we actually go over, and that we'll be given the chance to correspond with her because I think it will make the transition less scary if we're not quite so unknown. We've been told that sometimes this happens with Thailand and sometimes it doesn't; it depends on the timeline and the orphanage policy. Over the next few months we'll be making a scrapbook for her about our family and sometime in the next year it will be sent over, but the orphanage chooses when to share it with her. Really our wait has just begun, and we've got a long, long way to go before the exciting day when we board a plane and travel over to come face to face with our daughter for the first time.

In the meantime I'll take every opportunity I can get to send her little things made just for her. I don't expect her to assign any special meaning to them or even to keep them for herself (children in orphanages often aren't used to having possessions and will assume that gifts are for communal use), but I'll be happy because-- whether or not she knows it-- we're sending her little packages of love.

Friday, March 4, 2011

Connor stayed up until 2:30 in the morning, and then woke up at 7:00am raring to go. I swear the child is turning parental sleep deprivation into an art form.

I would have taken a nap during his school time, but he didn't go. This is because he had his first seizure-- a three minute one-- shortly before we were fixing to head out the door. Combining a major seizure with four and a half hours of sleep had the expected effect, and I put him back to bed.

The little guy ended up actually spending most of the day sleeping. This is because he kept conking out, due to the fact that he had seven seizures today.

Seven.

These things are supposed to be tapering off, dang it-- not heading in the other direction. Of course we're headed into a weekend too, which is even better. If he has another day like this tomorrow we'll probably be heading back to the hospital, because it won't be safe for him to be at home without stronger emergency drugs. It's always a struggle to know when to take him; any time he's at the hospital it puts him at risk of picking up an infection and complicating matters. However, they have more powerful IV drugs there that can stop a pattern of seizures much more quickly than anything we have at home, and since Connor's apneic seizures have come back (he had one today and six of the other type) it's dangerous for him to be having so many.

I'm sincerely hoping that the upped Lamictal dose just has yet to kick in, but the sudden upswing in seizures doesn't have me optimistic. So we'll just sit tight tomorrow and see what things look like. I'll be watching the kid like a hawk.

Or maybe Jeremy will be, since I might be napping. It's ten in the evening now and Connor is making it clear he has no plans to fall asleep any time soon.

Thursday, March 3, 2011

Connor had two more seizures today. The first one wasn't too bad-- it only lasted a few seconds-- but the second one was a couple of minutes long. He conked out in the middle of our local pet food store and we managed to scare the bejeezus out of several employees. He also threw up most of his lunch all over their floor when he came to, which probably didn't improve matters. Oh well.

He did make it all the way through the school day, which was pretty good. I'd originally planned not to send him, but he really wanted to go so I took him, figuring if he was really too tired his teacher would send him home. I'm not sure whether or not we'll make it tomorrow, though, because Connor and I may both be too tired to get out of bed. The upped dose of the Lamictal is giving the little guy a bad case of insomnia. He stayed awake until almost one thirty in the morning last night, and here it is past eleven in the evening and he's still wide awake. Of course that means that I'm wide awake too. I've got the apnea monitor out in the living room so that at least Jeremy can get some sleep.

Wednesday, March 2, 2011

We made it out the door around one in the afternoon today, and after dropping by the bookstore to get Connor his Reward Book we headed for the house, where we promptly climbed into bed and took a three hour nap. While the sleeper couches at Children's are pretty cushy for a hospital setup, I can't exactly say my sleep over the last two days has been restful, so I really needed that nap.

Connor needed the nap because he had another seizure on the way home. So that was great.

He had two today and we can expect him to have more over the next couple of days before his new Lamictal dose really kicks in, but thus far they've just been partial seizures that I feel comfortable handling at home and not the apneic seizures. We're tapering him down off the Ativan slowly; he was on it long enough that it's likely his body got used to having it and stopping it cold would trigger even more seizures. Hopefully the new Lamictal dose will tide us over until mid-April, which is when we'll be seeing our new specialist. Yep, we're adding one to the list; Connor will be seeing an epileptologist in Children's special Epilepsy unit. Up until this point we've been seeing a more general neurologist, but they feel that at this point Connor's seizures can be classified as intractable and so we qualify for the more specialized unit.

An epileptologist is a neurologist who specializes in epileptic seizures. We'll be examining other ways of controlling the little guy's seizures, potentially including the ketogenic diet and the vagus nerve stimulator implant. These are some really fantastic doctors who specialize in unusual cases like Connor's, so I'm really hoping we'll be able to find some good answers through the program.

In the meantime we'll be easing Connor back into his daily routine. The next couple of days it's extremely likely we'll be seeing more seizures, but we're hoping they'll be tapering off after that. I'm just glad we've got the little guy back home again and we have a game plan to follow. Hopefully we'll be able to stay home for a while!

We were actually headed for discharge yesterday after the doctors substantially upped Connor's Lamictal, but then the little guy (who has an impeccable sense of dramatic timing) had a two second seizure right after the neurologist walked out of the room. Jer and I were actually debating on whether or not it had been a seizure until we felt the kid's muscle tone and glanced at his pulse ox rates-- the kid was as limp as a soggy Cheerio and his sats were in the 70s. And then a couple of hours later he had another, longer seizure just to seal the deal.

So we're still here.

We're hoping to go home today; we'll talk with the doctors when they come by for rounds and see what they have to say about that happening. With any luck (and baring any more drama on Connor's part) we'll be headed back to the house in early afternoon. It'll take a couple of days for the higher Lamictal dose to really kick in, so just because we're seeing some little seizures now doesn't mean that the medication won't work. While Jer and I are anxious to go home I'm not sure Connor feels the same way, though. We let him watch all the TV he wants while he's in the hospital (a really special treat for a kid who lives in a house with no TV reception) as part of our strategy to make hospitals be Not Scary for as long as we possibly can. He especially loves the Food Network (which is interesting given that the kid doesn't really eat) and the classic programming channel. So I think he's enjoying himself when he's not snoozing like he's doing right now.

Tuesday, March 1, 2011

I should learn not to mention the hospital in my blog posts, because I think I'm jinxing myself. We're currently sitting in the emergency room at Children's in Seattle while we're waiting for a room on the neurology floor to open up. We transferred here from the hospital close to our house about an hour and a half ago. This is because Connor had five seizures today. Five. While on Ativan.

Glorious.

He started off the morning with a five second seizure at school. I was concerned because the seizure happened almost an hour after he'd had his Ativan dose for the day, but we decided to keep him in school because he's been missing so darn much of it lately. So I left him there, went home and promptly called our neurologist clinic to leave a message with the triage nurse. Connor took a little nap in the classroom and then was okay for the rest of his school time. Then he came home and fell asleep again.

I woke him up so we could leave for his orthotics fitting appointment around noon, and we took off a half an hour later. We were trucking down the highway when Connor started slapping his hand against his knee repeatedly. I looked back and saw his eyes roll towards the ceiling. He was having a simple partial seizure; he was seizing but still completely aware of what was going on, and so he was trying to let me know about it before he lost all muscle control and couldn't move his arms anymore. I pulled over to the highway shoulder and hopped out of the car. This seizure lasted about two minutes, and he fell asleep again afterwards.

Since we were already almost to the appointment and we'd had to cancel it twice previously because of seizures, I figured we'd go ahead and just go to it. Hopefully we'd be able to finish it without incident and get home. Connor was an angel through the whole appointment despite being extremely tired; they made a plaster of Paris cast of both of his feet and his torso and he didn't pout once through the whole thing. I told him that he could have a new book as a reward and we headed for home. The bookstore is on the way back to our house so I figured we could swing by really quickly and pick up a treat for him.

We were pulling out of the bookstore parking lot when he had seizure number three: another simple partial seizure. This one was about a minute long. By this point I was getting pretty nervous because it was obvious that the Ativan wasn't remotely doing the job anymore, and the only other emergency medication we had to use at home was the Diastat. I called Jeremy to give him an update and then hopped back in the car and started down the road again. About three minutes later Connor started seizing again, only this time he stopped breathing.

So I yanked the van across a lane and into the Home Depot parking lot, where I zoomed into a parking spot, jumped out of the car, unstrapped Connor and started mouth to mouth. When we got to two and a half minutes without him breathing, I pulled out the Diastat and used it. He stopped seizing about thirty seconds later-- probably too soon for the Diastat to have kicked in. Then about a minute later his eyes rolled up and he started seizing again, which is when I called 911.

By the time the fire truck got there Connor had snapped out of it again and was snoozing on the floor of the van. We were less than a block from the private hospital (our first port of call when Connor has an emergency close to home) so I denied transport and just drove him there myself. Since we had now completely exhausted our emergency seizure medicine options and he'd had five seizures that day, I wasn't comfortable having him at home any more while we waited for the neurologist to call us back. So off to the hospital we went.

We sat in the waiting room for a grand total of about two minutes before they called us back. I've found that when you start sentences off with "my child has seizures that cause him to stop breathing" you get a room in the ER really quickly. The nurse who came out to get us recognized Connor and called him by name. This is how you know you've been to the ER way too often. After a quick evaluation they decided that Connor needed to be transported to a hospital with a PICU, so they started making plans to move us to Children's.

And here we are.

Connor hasn't had any more seizures, I'm happy to say. He's still twitching every few minutes while he's awake and he's tired as all get out, which I'm not surprised by given that he's stuffed to the gills with benzodiozipines. Right now he's completely zonked; the neurologist team just came in and woke him up to look at him, and he was falling asleep again as they were leaving the room. We're expecting to be here overnight at the very least; hopefully we'll be able to leave some time tomorrow after they adjust his medication. At least we're at a hospital with a couch large enough for both Jeremy and me.

About The Author

I'm Connor's Mom. That pretty much explains everything. I mean, raising the epicenter of cuteness in the universe is tough, but it has its moments, all right.
I should probably mention that Connor has a submicroscopic, subtelomeric unbalanced translocation 46xy der t(1)(1;15)(q42;q26.2)-- an extremely rare chromosomal disorder. He keeps me on my toes!